Petersburg officials reduced the costs of children with serious diagnoses. Under the blow of at least 400 families

The city authorities, referring to the pandemic, cut expenses not only to the old people (blockade, veterans of the Great Patriotic War and Labor, Laris Workers), moving them from private boarding houses for elderly people in stumps, but also to babies and adolescents with disabilities. As mothers and dads complain, they are advised to contact state centers in Smolny, where the waiting sheet is scheduled for six months in advance and there are no demanded services and specialists.

Constancy - the key to calm

“Recently we were flooded with neighbors from above, for a while we were blocked by water,” says Daria Titova, the mother of an eight-year-old boy with disabilities (limited health opportunities). - Gosha woke up in the morning, wanted to go to wash, brush his teeth, and then suddenly there was no water in the tap. He had a collapse: “How so? I'm used to it, I need it! " Autists are very sensitive to such things, ”the woman continues. - They have a tendency to laws, repetitions, ordering - their fenghui. If his son has toys in his room, then they should always stand like that. God forbid something to move. When we return from school or go to the store, he chooses the same routes. You can’t turn off somewhere wrong. He will have a hysteria. The child will cease to understand: why, why? For autists, constancy in everything is the key to stability and tranquility, they perceive the world so.

Daria very intelligibly explains what autism is. Often repeats: “So that you understand ...” misunderstanding is one of the serious problems that the parents of children with this disease face. All the subtleties can not comprehend even people sympathizers and those who want to help. What can we say about those who do not set such a goal.

“Now imagine,” Dasha suggests, “a year and a half, day after day, Gosha was engaged in a private rehabilitation center after school. How to explain to him now that we won’t go there anymore and why? ..

Gosha understands the speech addressed to him, but only elementary phrases. The boy himself still does not say, like his peer with the same diagnosis of Volodya Komarov. Their mothers were brought closer to the general trouble.

“With the cessation of the work of the rehabilitation center, the usual course of Vova’s life was violated,” Ekaterina Komarova complains.

- The child had a certain schedule, for autists this is an integral part of life, and suddenly a pool on Wednesdays, classes with Marina and Lena on Tuesdays, with other familiar aunts on Saturdays disappeared from it.

Vova is impossible to explain for what reasons this happened. He requires classes, falls into hysteria. We began to go to the zoo, to the Aurora cruiser, to the parks. This will not replace classes in the center, but I still do not know how and how to replace them ...

Have the right

Children with disabilities in St. Petersburg, as elsewhere in Russia, by law can count on state support. Not only in the form of pensions and benefits, but also in the form of specialized assistance. Each disabled child should annually receive a certain amount of social services in accordance with his IPR (individual rehabilitation program). Parents of a baby or a teenager with disabilities have the right to choose any provider of social services from the current registry - state or non -state - and conclude an agreement with him.

According to parents, many families in St. Petersburg opt for a non-state organization-ANO “St. Petersburg Center for Social Adaptation, Rehabilitation and Abbilitation”. Created in 2012, Dmitry Kozlov, the father of a girl with Down syndrome, the center specializes in children with severe pathologies. The organization has several sites. Everything is in comfortable places, next to the special schools where children with disabilities study. In the center there are speech therapists, defectologists, psychologists, classes are underway on art therapy, AVA therapy, cance therapy, there is a pool.

During the year, a child, on the basis of IPPSU (individual program for the provision of social services), approved by the city administration, is engaged in specialists. Then parents sign the documents that their children received the necessary rehabilitation assistance, and the city compensates for the funds spent suppliers of souvenirs. This money goes for rent, taxes, salaries to specialists, administrators, etc. Before the end of last year, this scheme worked uninterruptedly.

There is no money

Since December 15, the Kozlov Center declared holidays until the end of January. And then parents were informed that there would be no more regular classes in children, restrictions are introduced.

“If earlier we could take an unlimited number of classes, then from this year the child was allowed to either visit the pool and nothing more, or choose one group lesson and one individual,” says Ekaterina Komarova. -We saw that they had some kind of checks every day, something is happening. But they did not answer direct questions to us. And in February, the leadership of the Center reported in the general group on the VKontakte social network: “For reasons beyond our control, the center temporarily suspenses its work.” Again without explanation.

In March, parents could not stand it and sent an appeal to the head of the city committee on social policy (KSP) to Alexander Rzhannkov. Daria Titova came to his appointment.

“Rzhanenkov explained to me that because of the pandemic, the city has no money and therefore we are recommended to go to state rehabilitation centers at the place of residence,” says Daria.

Soon, in the chat on the VKontakte social network, information appeared that the Kozlov center was left without a livelihood, the budget would not compensate him for the costs.

- Formally, officials do not prohibit the center to work, but deprive funding. How then? - the parents ask. - The center cannot take money from the wards, because it is ANO (autonomous non -profit organization) and does not have the right to conduct commercial activities.

You can not prohibit paying

Smolny treated with disabled children almost in the same way as with old people. The latter saved by significantly reducing subsidies for their maintenance in private boarding houses. They, as a result, lost the opportunity to provide good nutrition, treatment and accommodation.

Costs of expenses for children with disabilities in the city administration did not shred. But they revised the list of those non -state organizations that have been provided with subsidies for a minors with disabilities since 2021.

“The list of social services, for which costs are reimbursed for non -state suppliers, has not changed in 2021,” the Novaya Committee on Social Policy told. -However, the leading role in the social rehabilitation of children with disabilities in the city must perform state institutions. They provide a wide range of social services in various forms, ”officials emphasized.

Some private organizations on formal grounds were refused subsidies. Among them was the “St. Petersburg Center for Social Adaptation, Rehabilitation and Abbilitation”.

As the new "in the KSP was explained, the Kozlov center" refused to admit the selection of the right to obtain subsidies due to the failure to provide the necessary documents in full. " This happened only in April, and in the very center they had not yet figured out what kind of claims they are now being made by officials, but in general they are recognized by the worsening external circumstances:

- The attitude of the authorities towards non -state suppliers of souvenirs has changed, and the conditions for them have changed. In the new conditions, it is difficult for us to work, but we are not talking about the complete termination of work, ”Elena Sologubova commented on the“ new ”representative of the“ St. Petersburg Center for Social Adaptation, Rehabilitation and Abbilitation ”.

The KSP noted: “Today, in St. Petersburg, 20 organizations provide social services to children with disabilities, of which: 36 are non-state, 84-state ones. The capacities of these organizations allow you to serve up to 7 thousand disabled children per year. ”

In January 2021, according to Rosstat, 570 thousand disabled people live in St. Petersburg, of which 21 thousand are disabled children. That is, what is supposed to him by law receives at best every third St. Petersburg child with disabilities.

Without a choice

For four months that have passed since the suspension of the work of the Kozlov center, none of the parents transferred their child to a similar state organization. Firstly, this is unrealistic technically due to wild queues. Secondly, according to the experience of families that have already encountered budgetary institutions in this area, children do not just give as much as they receive in private centers, but in most cases they give them not what is required.

-In the State Center for Rehabilitation at the place of our residence there is no speech therapist, there is no defectologist, not to mention art therapy and canes therapy. There is a sewing workshop, the kitchen “Smart House”, a computer technology hall, hydromassage baths, exercise therapy, ”Ekaterina Komarova lists. - But my Vova is not necessary, but a speech therapist and a defectologist. I do not want to lead my son to the state center not because he is bad, but specifically he does not fit my child.

“I haven’t found an alternative to Sasha yet,” Elena Kapustina sighs. - If there were private centers in our area, similar to the one that Kozlov created, I would consider them. And state - no, we were already there. At first they waited for their turn for six months, and when they waited, it turned out: classes with a defectologist - half an hour of times a week, there is no speech therapist at all. But when I was issued an act of completed services, which they just did not enter there! I was indignant: there was none of this! Now we are offered to collect all the documents again, stand in line for six months, and for what?

- Why, not speaking Gaucher, classes with a speech therapist or the ability to show blue and red in the picture when he turns 18 years old? Will he walk with cards and show colors? - asks Daria Titova. - He needs to learn how to interact with the outside world. The specialists of the Kozlov center were sharpened precisely on this. They had an integrated approach. They built a system of classes so that the child had the skills necessary for him to life in this world. Any normal parent who has such a child first of all thinks about how he will live on when he grows up. Formally, we have an alternative, in fact, it is not.

I will not lead Gosha to the State Center for Rehabilitation - this will be the time spent. Accordingly, I will not give - it is not necessary to subsidize. Hidden savings in budget funds.

Do not dig: formally, the rights are not violated, but not realized. It is impossible not to allocate the amount for the rehabilitation of each disabled child. But you can create such conditions that it is impossible to master this amount.

“We discussed the real reasonable option many times,” the parents summarize. - For each of our childs in the budget, a certain amount in which his rehabilitation is laid is provided. Give us this amount as a certificate as maternity capital, and we ourselves will choose those specialists and those centers where we want to carry this money. But this option is not acceptable for the authorities, because it is disadvantageous.